Fitting - my first blog post is on D-Day. No, not the day the landing operations for the Allied invasion started in Normandy... the day our lives were forever changed, our hearts forever shattered with the realization that our only child has a disease that is going to try to kill her. Diagnosis Day. We have pieced our hearts back together in the year that has gone by, but they will never be the same. How could they be?
I'm a huge fan of alliteration... for me, it gives a statement a little more impact. And while there are other important things in my life - God, for instance - in our day to day, the reality is that we live for Lucy. I believe it's what God set me and my husband on this earth to do. Treatments, therapies and play fill our days, from waking to drifting off (drifting on the good days; on bad days - over tired days - it's Lucy whining herself to sleep).
Lucy is our daughter. Lucy just turned 15 months old. Lucy has SMA. Unfortunately, the last statement is a defining characteristic of who Lucy is. As much as SMA can hurt us at times, it is an intrinsic part of Lucy, and I could not imagine my baby girl being herself without it. Would I like to see a cure for SMA? Heck yes. Do I wish Lucy had been born without SMA? That question is a little more in the gray area. I wish Lucy didn't have to go through breathing treatments every day, endure isolation during the winter (re: germy) months, and could enjoy simple things others take for granted, like eating by mouth or running away from her mama. BUT, I just don't think Lucy would be as sweet, as soulfully observant, or as captivating as she is without SMA. This hideous disease forces babies to communicate and thrive on different levels than average babies. The attention they can pay to things in front of them is incredible, and it's as if you can see the gears grinding away behind their eyes.
I don't know if Lucy will ever be able to communicate conventionally with me. Right now, all she can manage is "bababa". I would contemplate severing a digit to hear her say "I love you Mama," but as it stands, I don't think it would do me any good. Plus, my newfound blogging hobby would be significantly hindered. However, Lucy has her eyes; her big beautiful eyes that can speak volumes. Eyes that can share thoughts and emotions that she wouldn't be able to put into words yet, even if she had a vocabulary. And until I win that multimillion dollar lottery and fund the cure, I consider myself blessed to be the one those eyes are focused on.
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